Neuro Data Rights project

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Contact m@melanieswan.com

Outline

• Introduction and Aim
• Concept Definition and Topics
• Precedents
• Different Potential Approaches
• Practicalities and Technicalities
• Biggest Potential Fears
• Biggest Potential Benefits
• Project Structure
• Other

Introduction and Aim  

An increasing number of new personalized data streams are being generated through quantified self-tracking devices, biosensors, wireless Internet-of-things devices, health social network data, and social media data. Rapidly advancing could be continuous health informatics climates including streaming data from consumer EEGs and other brain and emotion measuring devices. The aim of the Neuro Data Rights project is to investigate and set the tone for how issues regarding these new personal data streams can be problematicized to support and facilitate humanity's future directions in a mature, comfortable, and empowering way.

Concept Definition and Topics

• Data streams: Personal neuro data streams (consumer EEG, fMRI, PPG), personal eye-tracking data, biometric data streams from objective metric sensor devices, social media data streams
• Changing definitions of personal and personal data
• Extended self and exosenses (through mobile phone, smartwatch, augmented reality glasses (e.g.; Google Glass project & expected knock-offs, wearable electronics, biosensors)
• Neuro data: quantified self, neuroethics, neurodiversity, neuroexpression, neurocommunications
• Data related issues: standards, formats, transmission, privacy, security, sharing, permissioning, ownership, storage, access, economics, business models
• Should there be a difference in the treatment of pure neurobiophysical response data (e.g.; affect) and human-labeled response data (e.g.; emotion)? (link discussing separation of affect and emotion)

Precedents

• Primer of other personal data security/privacy models
• Genomic data, Medical data, Census data, Financial data
• Different responses of different countries or groups (including selective adoption, limited adoption, evaluation-based adoption)

Different Potential Approaches

• Rights/responsibilities model
• Access versus ownership model
• What are the Key Questions to Address? 
• How should I think about what my neuro privacy rights should be?

Practicalities and Technicalities

• Current State of Technology
• Example: fMRI data predicts visual imagery of viewer, Jack Gallant, UC Berkeley
• Example: Synthetic telepathy, UC Irvine
• Example: State-of-the-art EEG speller, Tsinghua U. Other apps.
• Practical Impact
• Help manage the biggest potential risks and fears (see below) 
• Destigmatize pathologies (as has been the case with personal genomic data)
• Speed enhancement, normalization programs 

Biggest Potential Risks / Fears

• Everyone will know what I am thinking. Surveillance society, thought police, etc
• Some people will know what I am thinking some of the time, and use it against me (identity theft, bank account theft, blackmail, embarrassment, harassment)
• Thought control (regardless of whether this is a rational fear)  
• Unwanted ads, brain spam, viruses, snow crashes, etc. (Maybe fearing thought control is irrational, but fearing thought "nudges" is not...)
• My wife will know what I am thinking. Oh wait, she already does. 

Biggest Potential Benefits

• Improved communication (convenience up, bandwidth up, distribution up). E.g. "silent messaging".  
• Improved processing (speed up, throughput up,  reliability up)
• Improved memory (capacity up, read / write rate up, reliability up). E.g. "Perfect memory". 
• It sounds irresistibly fun!
• I will know what my wife is thinking 
  

Ideas to Minimize Risks and Maximize Benefits

• Personal Faraday cages required given the potential rapid progress of electromagnetic spectrum detection and lack of social maturity regarding thought-sharing. "Faraday Fashion" anyone?
• Appropriate laws, appropriate punishments
• Thoughtfully-designed BCI protocols with appropriate security. Asynchronous, layered privacy
• Pre-emptively educating the mass public, in accessible formats. Viral videos, social networks, novels, children's books, lecture circuit, movies. How to give neuro data rights its "15 minutes of fame"? What's the stickiest message?
• Pre-emptive patents for brain security, that are part of a not-for-profit organization. Make it easy to add patents here. Encourage companies to join this organization. (Let's not try to change the patent system here, but instead exploit its rules for the benefit of society.)
• Open-source or reference-design software implementing secure protocols, perhaps with backing of big companies. (A la Apache). Maybe reference design hardware too (A la Google Nexus.)

Project Structure

• Phase I
•  Article exposing the relevant issues, collaboration: Greg McMullen, Melanie Swan 
  
• Phase II
• Book anthology, Greg McMullen, Melanie Swan, editors. Curated essay collection from topical thought-leaders. Potential contributors: Cory Doctorow, Charles Stross, Stu Card, Trent McConaghy,
• IEEE Standards Working Group (Part of the 802 category?) - body sensor networks, body area networking, 802.15 Wireless Personal Area Network (WPAN) 
• Conference
• Meetup groups
• Policy fellowship

Resources

• Brain privacy meeting 2003
• Wikipedia re: cognitive liberty